Aa
MS plus Hydrocephalus
Hi I am posting my first question/info and I am feeling rather nervous. My situation is very complex I think and is really getting me down.
I am 44 and have normal Pressure Hydrocephalus. My surgeon and I thought it was this that was causing me to have the increased problems with walking, balance, speech,dizziness and numbness. My neurosurgeon was planning to try and operate on me again using an existing reservoir I have, and re work it into a draining shunt but this has now been abandoned. Whilst waiting for consultation to finalize situation after results of spinal MRI I suddenly lost sight in right eye and was admitted to local hospital and after CT scan was performed I was then transferred to specialist Neuro hospital where my previous surgery had taken place.
I am now looking at possible/probable diagnosis of NPH and MS. Just my luck!!!
On examining the eye optic nerve was seen to be swollen. 3 weeks on vision almost back to normal.
I am now waiting urgent appointment to have yet another MRI but this time with contrast. They suspect MS now but due to NPH think two conditions making firm diagnosis difficult
Does anyone have any experience of these two problems together?
A doctor or ward round during my last 8 day stay in hospital says it looks like I am having extreme bad luck. I have been having progressive symptoms now for last 3 years and just want to get diagnosis to help me explain falling over, slurring and mixing up speech all the time.
I am 44 and have normal Pressure Hydrocephalus. My surgeon and I thought it was this that was causing me to have the increased problems with walking, balance, speech,dizziness and numbness. My neurosurgeon was planning to try and operate on me again using an existing reservoir I have, and re work it into a draining shunt but this has now been abandoned. Whilst waiting for consultation to finalize situation after results of spinal MRI I suddenly lost sight in right eye and was admitted to local hospital and after CT scan was performed I was then transferred to specialist Neuro hospital where my previous surgery had taken place.
I am now looking at possible/probable diagnosis of NPH and MS. Just my luck!!!
On examining the eye optic nerve was seen to be swollen. 3 weeks on vision almost back to normal.
I am now waiting urgent appointment to have yet another MRI but this time with contrast. They suspect MS now but due to NPH think two conditions making firm diagnosis difficult
Does anyone have any experience of these two problems together?
A doctor or ward round during my last 8 day stay in hospital says it looks like I am having extreme bad luck. I have been having progressive symptoms now for last 3 years and just want to get diagnosis to help me explain falling over, slurring and mixing up speech all the time.
HI, I am also curious if you have anymore findings on MS and hydrocephalus. I am 20 years old and for as long as I can remember my grandmother was diagnosed with MS. I had just found out today that she has been admitted to the hospital due to fluid on the brain. No one has told me anything so I decided to do a little research of my own, and I have stumbled a crossed hydrocephalus now I have never heard of this before so I decided to take a further look into it and I understand that it is fluid from the spine that hasn't been able to be drained from the brain and I know that it could also be cause by injury or illness and since I know that she has not been injured the only thing that I can think of was her MS so I did a little extra digging and found this site and the comment you have left. I would really appreciate it you could find the time to get back to this or if in any way an email can be exchanged, like I said no one is telling me anything and my grandma is my life.
Thank you,
Alexandra
Thank you,
Alexandra
HI, I am also curious if you have anymore findings on MS and hydrocephalus. I am 20 years old and for as long as I can remember my grandmother was diagnosed with MS. I had just found out today that she has been admitted to the hospital due to fluid on the brain. No one has told me anything so I decided to do a little research of my own, and I have stumbled a crossed hydrocephalus now I have never heard of this before so I decided to take a further look into it and I understand that it is fluid from the spine that hasn't been able to be drained from the brain and I know that it could also be cause by injury or illness and since I know that she has not been injured the only thing that I can think of was her MS so I did a little extra digging and found this site and the comment you have left. I would really appreciate it you could find the time to get back to this or if in any way an email can be exchanged, like I said no one is telling me anything and my grandma is my life.
Thank you,
Alexandra
Thank you,
Alexandra
Thank you so much Jane! I appreciate your quick response. You know - I actually thought that I was sending Chris a message directly, but it then posted to this site. I'm not sure how to reach him directly - would you happen to know if there is a way I can do that? Thanks again for reading!
-Jen
-Jen
Hi Jen: Please note that the last post from chrismd is very old. He is probably not checking this thread any more. I recommend sending him a private message to increase your chances of receiving a response. Also, I wish your brother and family well as you go through this difficult.time. - Jane
Hi Dr. Chris,
I'm not sure you will receive this post, but if you do, I would like to hear if you have any additional findings related to MS and Hydrocephalus in your 3 patients. I ask because my brother, 31 years old was diagnosed with hydrocephalus about 12 years ago. He had fallen and had a concussion, which triggered his doctor at the time to order an MRI of the brain. That is when they first saw the hydrocephalus. We consulted a well known Neurologist (recommended to us from a very close family friend who just so happens to be a Neurophysiologist - fate - possibly). They don't know when my brother may have first developed hydrocephalus, but suggested that he have a third ventriculostomy for precautionary measures. He has been having fairly routine MRI's to see if there has been any change over the last 12 years and thankfully, no change (for the worse). We have been very relieved over the results until April of 2011 where my brother had numbness in his legs and lower back/butt area. He was admitted into the local hospital for 3 days where he had basically every test there was to give and was released stating that there was still no change in his hydrocephalus condition, but that he had 2 herniated discs, which was causing his numbness. He went to see a chiropractor, an acupuncturist and finally went for prolotherapy. He regained most of the feeling back in his legs and back and was happy with the results of the prolo. UNTIL - March of this year, 2012. A bad sinus and ear infection then trigger a host of symptoms of imbalance, facial numbness and drooping, trouble swallowing, hand and feet/leg tingling and numbness, etc. The symptoms traveled for 3 months to various parts of his body all taking a few weeks before traveling. During this time, he was seen by a neurologist, an ENT and a GP, none of which raised the red flag for MS. He went back to the prolotherapy doctor who suggested he go for another MRI of the brain and thoracic spine. We were once again referred to the Neurologist. There the Neurologist detected lesions (2) on his spine and some on the brain that weren't detected back in 2011. He has been for a lumbar puncture and an optic nerve test as well. He has been diagnosed with MS and is waiting on treatment options, which the doctor is suggesting Copaxone. So, LONG LONG LONG story short, we are too wondering about a possible connection and/or some hope here. He's just 31 and has his whole life ahead of him...he has been very positive about his diagnosis (thankfully for the moment) and is anxious to start treatment and move forward. Of course, this is a shock to our family and we are all searching for information and education on how to best go about his newly diagnosed condition - we are all a team here in my family! :) We want him to have the very best treatment there is (naturally). Any and all insight and education or findings you might have would be welcomed. I look forward to hearing from you and hope you receive this message. Thanks so much for your time.
-Jen
I'm not sure you will receive this post, but if you do, I would like to hear if you have any additional findings related to MS and Hydrocephalus in your 3 patients. I ask because my brother, 31 years old was diagnosed with hydrocephalus about 12 years ago. He had fallen and had a concussion, which triggered his doctor at the time to order an MRI of the brain. That is when they first saw the hydrocephalus. We consulted a well known Neurologist (recommended to us from a very close family friend who just so happens to be a Neurophysiologist - fate - possibly). They don't know when my brother may have first developed hydrocephalus, but suggested that he have a third ventriculostomy for precautionary measures. He has been having fairly routine MRI's to see if there has been any change over the last 12 years and thankfully, no change (for the worse). We have been very relieved over the results until April of 2011 where my brother had numbness in his legs and lower back/butt area. He was admitted into the local hospital for 3 days where he had basically every test there was to give and was released stating that there was still no change in his hydrocephalus condition, but that he had 2 herniated discs, which was causing his numbness. He went to see a chiropractor, an acupuncturist and finally went for prolotherapy. He regained most of the feeling back in his legs and back and was happy with the results of the prolo. UNTIL - March of this year, 2012. A bad sinus and ear infection then trigger a host of symptoms of imbalance, facial numbness and drooping, trouble swallowing, hand and feet/leg tingling and numbness, etc. The symptoms traveled for 3 months to various parts of his body all taking a few weeks before traveling. During this time, he was seen by a neurologist, an ENT and a GP, none of which raised the red flag for MS. He went back to the prolotherapy doctor who suggested he go for another MRI of the brain and thoracic spine. We were once again referred to the Neurologist. There the Neurologist detected lesions (2) on his spine and some on the brain that weren't detected back in 2011. He has been for a lumbar puncture and an optic nerve test as well. He has been diagnosed with MS and is waiting on treatment options, which the doctor is suggesting Copaxone. So, LONG LONG LONG story short, we are too wondering about a possible connection and/or some hope here. He's just 31 and has his whole life ahead of him...he has been very positive about his diagnosis (thankfully for the moment) and is anxious to start treatment and move forward. Of course, this is a shock to our family and we are all searching for information and education on how to best go about his newly diagnosed condition - we are all a team here in my family! :) We want him to have the very best treatment there is (naturally). Any and all insight and education or findings you might have would be welcomed. I look forward to hearing from you and hope you receive this message. Thanks so much for your time.
-Jen
Tim, you might want to send a message to chris directly. This post is over a year old and he probably won't see your question unless you message him directly.
Julie
Julie
I'm very interested in this post. My wife has had MS for over 50 years and 3 years ago diagnosed with NPH also. She received a V-P Shunt about 2 1/2 yrs ago but it has not improved her condition. I suspect the NPH diagnosis was not correct and that she had considerable brain atrophy due to the long-term MS. Could you share the results of your studies?
I am an MS specialist who is unaware of a prior described association between the 2 conditions. I found this site because I am presently looking at 3 patients who may have the combination. As atrophy of the brain is so common, the hydrocephalus in MS is often blamed as a hydrocephalus ex vacuo, meaning that the space from the loss of brain tissue from the MS is filled in by the spinal fluid and is not really hydrocephalus in pure form. I will let you know how this plays out with my 3 patients
I am so thankful I happened upon your post!
I was diagnosed with Acquired Communicating Hydrocephalus when I was 27; I'm now 36. I've been through the double vision, the temporary loss of vision, headaches, people thinking I'm drunk from the slurred speech and/or loss of balance, etc. Surprisingly, I don't have a shunt, my Hydrocephalus has been successfully treated with lumbar punctures. I have a couple of questions for you. Do you have communicating or non-communicating? When were you diagnosed? The reason I ask when you were diagnosed is because Normal Pressure Hydrocephalus typically seen in the elderly. The Hydrocephalus Assoc has a great book about Hydrocephalus diagnosed in young to mid life, which they are finding is in a class of its own.
You can find it here: http://www.hydroassoc.org/docs/SHYMA.pdf
Two things I've learned the hard way .... Vitamins A & D are bad for us, especially in face creams and the more weight you carry, the higher you ICP will be.
About the Multiple Sclerosis, I have symptoms of MS too. A couple years ago, my entire right side of the body went numbish & my MRI showed what could be perceived as lesions on the brain. My Neurosurgeon told me that if I didn't have Hydrocephalus, he would have diagnosed me with MS right then & there. He said that having two distinctively different neurological disorders was very rare. After a lot of questions, he learned that I was dieting & was eating sugar-free foods; almost all contained Aspartame. He told me that Aspartame can cause symptoms of MS in some women. I cut out the Aspartame and got the feeling back after a couple weeks. My next MRI still showed what appeared to be lesions, but less than the previous MRI so it was chalked up to white mass related to the Hydrocephalus.
Here I am years later and I have numbness & tingling from my hips down (no pain); especially in my feet. I'm also experiencing an electrical feeling that runs down my back to my feet when I bend my neck forward. They've ruled out Spinal Stenosis and Cauda Equina Syndrome and highly suspect MS. I actually start the testing for MS next week.
I apologize for being so long winded, I'm just overjoyed that there is at least one other person who understands what it's like facing these issues. I sincerely wish the best for you and would love to an update on your condition.
I was diagnosed with Acquired Communicating Hydrocephalus when I was 27; I'm now 36. I've been through the double vision, the temporary loss of vision, headaches, people thinking I'm drunk from the slurred speech and/or loss of balance, etc. Surprisingly, I don't have a shunt, my Hydrocephalus has been successfully treated with lumbar punctures. I have a couple of questions for you. Do you have communicating or non-communicating? When were you diagnosed? The reason I ask when you were diagnosed is because Normal Pressure Hydrocephalus typically seen in the elderly. The Hydrocephalus Assoc has a great book about Hydrocephalus diagnosed in young to mid life, which they are finding is in a class of its own.
You can find it here: http://www.hydroassoc.org/docs/SHYMA.pdf
Two things I've learned the hard way .... Vitamins A & D are bad for us, especially in face creams and the more weight you carry, the higher you ICP will be.
About the Multiple Sclerosis, I have symptoms of MS too. A couple years ago, my entire right side of the body went numbish & my MRI showed what could be perceived as lesions on the brain. My Neurosurgeon told me that if I didn't have Hydrocephalus, he would have diagnosed me with MS right then & there. He said that having two distinctively different neurological disorders was very rare. After a lot of questions, he learned that I was dieting & was eating sugar-free foods; almost all contained Aspartame. He told me that Aspartame can cause symptoms of MS in some women. I cut out the Aspartame and got the feeling back after a couple weeks. My next MRI still showed what appeared to be lesions, but less than the previous MRI so it was chalked up to white mass related to the Hydrocephalus.
Here I am years later and I have numbness & tingling from my hips down (no pain); especially in my feet. I'm also experiencing an electrical feeling that runs down my back to my feet when I bend my neck forward. They've ruled out Spinal Stenosis and Cauda Equina Syndrome and highly suspect MS. I actually start the testing for MS next week.
I apologize for being so long winded, I'm just overjoyed that there is at least one other person who understands what it's like facing these issues. I sincerely wish the best for you and would love to an update on your condition.
HI monkeygirl
I would also like to say hello and welcome.
I know nothing at all about NPH but hopefully there will be someone on here who does.
I'm sorry that you are going through this.
Mand
I would also like to say hello and welcome.
I know nothing at all about NPH but hopefully there will be someone on here who does.
I'm sorry that you are going through this.
Mand
Hi, Monkeygirl. Welcome to the MS forum.
I think the lack of answers thus far is because few if any of us know about NPH. This does sound very complex, especially since you also are having MS symptoms. I'm so glad your vision has returned. That must have been a terrible worry.
Please keep in touch with us and let us know how you are and what is happening in your diagnostic progress. This can be a learning experience for us as well.
Again, welcome.
ess
I think the lack of answers thus far is because few if any of us know about NPH. This does sound very complex, especially since you also are having MS symptoms. I'm so glad your vision has returned. That must have been a terrible worry.
Please keep in touch with us and let us know how you are and what is happening in your diagnostic progress. This can be a learning experience for us as well.
Again, welcome.
ess
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